Has anyone had necrosis? I’ve had swelling since my first radiation treatment last March. No one listened to me so I didn’t start steroids till November when I finally ended up in the hospital. Now I’ve been on them ever since and every time we lower the dosage the swelling comes back but worse.
I had to have 2 radiation treatments cause my avm is pretty big. My doctors told me that the second treatment would be better and I’d feel better after and have no swelling etc but it actually got to the point that almost 1/4 of my brain was swelling.
I’m wondering if I maybe have radiation necrosis? I just can’t understand how it’s possible to have brain swelling for this long and for it to not go down and just keep getting worse.
It’s caused seizures, vision loss, motor skills deficits etc and I just don’t get it.
I had an MRI to check if my avm has shrunk a few weeks ago and he said that where the first part they treated is, it’s “empty”. I don’t know what they mean by empty.
I don’t think I can upload a picture on here but the part they’re talking about is now black in the middle and surrounded by white. I also still have swelling so maybe that’s what the white is. My doctors aren’t straight up with me cause they “feel bad” and feel they’re to blame for everything going on. I just moved to a different country so I have no idea when I’ll have a new neurologist/neurosurgeon so not sure where to turn to.